Wednesday, February 26, 2014

Change In Treament

Finally pushed myself to the rheumatologist. She told me what I already knew: I'm having a severe lupus flare. I could barely hold my head up when I was being examined.

So she put me on cymbalta for the extreme pain. Started a sample yesterday to see if I could tolerate it. So far so good. She's also putting me on a medication that is given intravenously. Problem is it costs $28,000 a year. That is the cost of the generic version. No, I cannot afford to do this. So she's checking into a program to take a bite out of the cost. Until I'm cleared, I'll just suffer along.

The drug is called Belimumab, generic for Benlysia. It has some pretty nasty side affects:  http://www.benlysta.com/

http://en.wikipedia.org/wiki/Belimumab

This one stuck out:
Common adverse effects reported with belimumab include nausea, diarrhea, fever, as well as hypersensitivity and infusion-site reactions (severe in 0.9% of patients). It is suggested that patients be treated with an antihistamine prior to a belimumab infusion.[13]
A greater number of serious infections and deaths were reported in patients treated with belimumab than in those treated with placebo. Infections are due to the immunosuppressant properties of the drug.


This is the first medication designed for lupus treatment. Quite frankly I'm tired of being imprisoned in a sick body,
 having no life or friends, and  existing. If I can find a way to pay for this and if this is the hope for suppressing this horrible disease,
I need to try it. Nothing else is working. I'm running high fevers, swollen joints, severe pain, severe fatigue, etc. etc. etc. You can only take
so much before you give up. And I'm on the threshold of giving up. "Why bother?" races through my mind far
more than it used to. I'm tired of fighting alone.
   
A lady took me to my appointment since I have no feeling in either legs or feet and my eyesight is totally shot
from this horrible disease. I told her that I have lost more friends than I can count. People don't want to be around someone who is sick
and limited. A few years ago I had to have someone come in to help me with housework, check on me, and just be there.
The wonderful woman who looked over this program told me I wasn't alone in this thinking. She said those who have family
sought out their help so that they wouldn't have to see or deal with their sick loved ones. She also said churches were the worst.
If you're sick and unable to do something for the church, they're not interested. Boy could I share some personal experiences there!

It is hard to get up in the morning and face another day of illness and suffering. It is even harder to do this alone. I've been too sick to
walk around the neighborhood let alone walk downtown and get the things I need. My greatest fear is dying and no one finding my body
for days or weeks. I worry about Rascal. Keep food and water bowls filled to the max in case something happens. I never want him to suffer
should something happen to me.

There has to be hope to keep going on.

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